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Sleep Apnoea Forum Bringing Help + Support to the Patient
Welcome to our Forum - Feel Free to Introduce Yourself Here.
Welcome to the Hope2SleepGuide Forum, which is a service run by the Hope2Sleep Charity founded by Kath Hope with a marvellous team of trustees and volunteers.
Kath herself has severe sleep apnoea and hypoventilation/hypercapnia, and has used CPAP for several years and is now on non-invasive ventilation. Our trustees and volunteers are all either sufferers of sleep disordered breathing or clinicians/medics working in this field, and most importantly, we are all passionate in supporting (with empathy) others and raising awareness to help people live healthier and more energised lives.
Whilst we do not give medical advice, more often than not, with support, tips and knowledge, people can overcome any problems experienced with our therapy, and there is a whole page dedicated to this on the website http://www.hope2sleep.co.uk/tips-for-problems-sleeping-with-cpap-or...
Please come and join us, and don’t feel obligated to use your ‘real’ name if you prefer to remain anonymous as this is a public forum. Don’t be shy in posting and sharing, as we’re all in this together and to help each other.
Best Wishes for good sleep!
Kath
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Replies to This Discussion
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Permalink Reply by 99 on
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it is not ebay stopping these sale, it is resmed and respironics to keep prices high
Jackie said:Hi Kath, John and Rosemary
I hope you do not consider this reply rude to just do one ... if so please let me know and I will not be naughty again.
Such a lot of interesting info here and ideas.
Rosemary, oh your poor teeth ... how horrible - and how creative with the straps - just wouldn't know how to begin doing that - I can make cards and things but I'm not a sewing/dress making person at all.
John - the liners did nothing for me. They either got almost swallowed or just pulled out of alignment completely.
Interesting point with the cream - will have another go with it that way.
Kath - on the base of my CPAP machine it does says something about USA restricted or something but UK none - doh cannot remember properly, would have to look again, but back is killing me and I am not going upstairs until I have to do.
perhaps if more than one person has a go at ebay? I can see the sense of machines not being allowed, but accessories ??? Does resmed require a prescription for a mask only? What about a petition to ebay??? does ebid have the same restrictions?
I will definetely have a go at getting that fit lite mask or perhaps similar from hospital. I do sleep on my side and use a feather pillow on top of a foam so that I can tuck the feather one under my face away from the mask but I do have to turn several times at least during the night because of the pain and I go on my back for a few minutes to raise knees a little to try and ease back.
I don't get too much marking on face with the liberty, but my nostrels make me look like Miss Piggy for a while when getting up.
The 1st mask I think was I think quattro??? and I used to look like I'd been in a car accident lol. I just couldn't cope with the pain of that on my nose and the broken skin.
I've had a look at some different masks on resmed - okay ..... vented unvented??? sorry if being thick but what is the difference ? the only thing my brain is working on is the expellation of the air?
would unvented mean your partner doesn't get a freezing back???
Having the energy to 'twiddle' with things is a huge thing - finding the desire is almost as bad. To be honest, some days takes a lot of effort just to clean the mask and tank.
I know there isn't going to be a miracle cure sigh ... but at least I can try different things to help with comfort and adjustment.
Thank you to everyone
I know I am not alone for sure :)
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Permalink Reply by Kath Hope on
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I don't think it is 99, as I've fought and fought Ebay and Respironics have said they'd back me if I need them to. They won't allow the sales of masks on Ebay because they say they're a prescription item. I've tried telling them that they're NOT a prescription item in the UK, but they refuse to listen :( I have other Respironics products on there with no problem - just can't get the masks on :(
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Permalink Reply by Derek Craven on
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Hi there,
I am a long time cpap user, coming up to 5 years this June but have only just discovered this forum and Kath's site.
Already subscribed to news letter, bought a cover for my tube to stop it rattling on bedside table and downloaded the sleepyhead software. I never dreamed there was so much info out there and so many people willing to share it.
I started my treatment in Cumbria at the local hospital with Resmed equipment( An instant hit with me ) won't say i was a bad sufferer but my combined AH score in the sleep test was 53/hr, after 1 month on cpap it was 10 and has averaged between 5 and 6 ever since.
I now live in West Yorks and Bradford hospitals do not keep equipment, patients deal direct with Respironics who are very helpful, but a phone call is not the same as talking face to face, I only see the cpap nurse or specialist once a year and have not yet met a fellow sufferer.
How nice it is to hear from other people.
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Where have you been Derek? LOL Joking apart, lovely to have you on here and glad you found us. I'm sure you have a wealth of expertise to offer others. I've heard great reports of one of the Bradford hospitals. Most of us only see our clinics once a year, and recently some people have been told they don't even need to go back annually - cutbacks again :( Look out for new support groups in your area that are popping up. When I hear of them I post them under the Events section on here.
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Permalink Reply by Terry Vella on
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Welcome Derek, there are lots of diagnosed eople with SA out there but many don't talk about it so you wouldn't know. A friend of mine was on CPAP for 10 years and I didn't know until I started talking to him about my diagnosis. It seemed to have a stigma but is now accepted like depression and other illnesses. Hopefully we can learn from you and you from us. I'm on another site and a CPAP user in the US with 5 years CPAP experince didn't know about mask liners and continually had mask leaks, I suggest he try them and no more mask leaks and he said his CPAP experience is much more comfortable, anyway once again welcome.
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Hi Kath & Terry
Thanks for taking the time to read my little bit and bothering to reply. The hospital I go to is St Lukes Bradford (Horton wing)
The nurse who runs the clinic told me on my last visit in March that she was trying to set up a support group, but have not yet heard anything
You are right Terry about stigma, the only other person I have come across was by accident, I saw his cpap m/c in bedroom when I was working in his house, but he didn't really want to talk about it! - never mind!!
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Thank goodness for the Internet and websites like this.
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That's interesting. I didn't realise there's a stigma about having sleep apnoea, but I suppose that's because people have no problem talking to me about it, knowing I've got it. I wonder if it's because they feel 'different' having to wear the mask. If only they realised how common it is, and we're the lucky ones that have been diagnosed. I was speaking to a nursing manager in charge of a large sleep clinic on Saturday, and she said that statistics are possibly wrong and that it's as much as over 10% of the population with OSA - that's a lot of people.
I hope they get a Support Group in your area - as they're really beneficial in getting to know others and comparing notes and tips on their treatment.
Derek Craven said:Hi Kath & Terry
Thanks for taking the time to read my little bit and bothering to reply. The hospital I go to is St Lukes Bradford (Horton wing)
The nurse who runs the clinic told me on my last visit in March that she was trying to set up a support group, but have not yet heard anything
You are right Terry about stigma, the only other person I have come across was by accident, I saw his cpap m/c in bedroom when I was working in his house, but he didn't really want to talk about it! - never mind!!
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Kath, I think the stigma was more in the old days, now it may be the 'in' thing lol.
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Well, considering most of us feel so much better in ourselves it could possibly be turning into the 'in' thing! When I was young I hated wearing glasses, but nowadays kids actually like them (the designer ones of course lol). Same for teeth braces.
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Permalink Reply by Norman Jagger on
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Hi
Kath thanks for the invite I would love to come but I find it difficult to travel and because of my age over 80 tire soon i am in remission from cancer of the throat.
Thanks all the same,I shall soon visit the forum
Best Wishes
Norman
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That's a shame Norman, and I'm sorry to hear of your throat cancer, but glad to hear you're in remission and hope this lasts. Do you find CPAP hard to tolerate due to the throat cancer?
Norman Jagger said:Hi
Kath thanks for the invite I would love to come but I find it difficult to travel and because of my age over 80 tire soon i am in remission from cancer of the throat.
Thanks all the same,I shall soon visit the forum
Best Wishes
Norman
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